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Standardized, Evidence-Based Care Pathways to Improve Health Outcomes in Patients with Cystic Fibrosis

Currently, the median survival for patients with cystic fibrosis (CF) is 35 years. It is estimated that, with the consistent use of evidenced-based standardized care, the life expectancy of people with CF could be extended an additional 5 to 10 years. Therefore, providers and administrators at the Emory CF Center and the Affiliate Center at Scottish Rite collaborated to develop evidence-based pulmonary and nutrition pathways for the care of CF patients. Our hypothesis in developing these pathways was that universal use of the pathways would rapidly result in improvement of patient outcomes including measures of lung and nutritional health and ultimately in improved survival and quality of life. In January 2006, these pathways were implemented at both Centers with a utilization rate of over 90%. Recently, the collaboration was extended to include Dr Paula Edwards and personnel from Georgia Tech as decision support analysts and technical consultants for this quality improvement initiative. The goal of the proposed research is to combine clinical expertise from the CF Centers with measurement, analytical, and technical expertise from Georgia Tech's Health Systems Institute to:

  1. Analyze patient outcomes and care pathway utilization to determine the effectiveness of the implemented care pathways
  2. Leverage the existing CF Registry to develop a CF outcomes measurement and reporting system that can be used to analyze the effectiveness of future quality improvement initiatives.

Based on the results of the effectiveness analysis, opportunities for iterative improvement to the pathways will be identified. If the implemented pathways demonstrate a significant improvement in patient health outcomes, then these pathways would be shared with CF Centers throughout the country so that all CF patients could realize the health benefits associated with use of these care pathways. While several CF Centers have developed nutrition pathways, the pulmonary pathways of care developed by the Emory/Scottish Rite CF Centers and evaluated through the proposed research will be the first such pathways shared at a national level. Future research opportunities include disseminating the outcomes measurement and reporting system for use by other CF Centers nationwide to provide operational and clinical decision support.

Investigators: Michael Schechter (Emory, Pediatrics) and Paula Edwards (GT/Children's Healthcare of Atlanta, Health Systems Institute)

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